Scary lack of funding for rare cancer research

They are three terrible words that change your life: "You have cancer."

They set you on a path that can become part of your identity: the "cancer patient", on a treadmill of doctors, treatments, hospitals, then, hopefully, the "cancer survivor".

"Still a long way to go": Dr Helen Zorbas.Credit:Dallas Kilponen

But for some diagnoses, there is no set path.

Richard Vines, the director of Rare Cancers Australia, advocates for those who may be the only person, or one of a few, in Australia to have their type of cancer.

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Rare and less common cancers receive about 20 per cent of cancer funding, though they account for about half of cancer deaths.Credit:Jessica Shapiro

"There's absolutely nobody in Australia you can go to," he says. "There is not enough money and there is not enough research, so you don't have centres of expertise, you don't have that brilliant part-academic, part-clinician researcher who is the pick of the bunch for that particular tumour type."

A massive research report released this week by Cancer Australia illustrates his point. It shows the research money spent on common cancers such as breast and prostate cancer is disproportionately greater than that spent on less common cancers, considering their relative impacts in terms of death and disability.

Common cancers affect, but do not kill, more people. Their treatment, research and advocacy is often far more co-ordinated, and those left behind say the odds are stacked against them when success is linked to size.

Rare and less common cancers receive about 20 per cent of cancer funding, even though they account for 50 per cent of cancer deaths.

More support is needed to fund cancer research.Credit:Bloomberg

The Cancer Australia report shows the huge investment Australia makes in understanding and treating cancer, with more than a billion dollars spent between 2006 and 2011.

Things have improved, says chief executive Helen Zorbas, since the funding discrepancy was discovered in the first Cancer Australia research audit in 2005, when rare and less common cancers received only 16 per cent of funding. "But there's still a long way to go," she says.

While funding bodies can now see where money is being directed, fund-raising has also come to provide more money, shifting the balance away from generic cancer research and towards specific types of cancer.

The share of funding to breast cancer has also gone down, but it still receives many more dollars for every person whose life is affected by it than other cancers do. And unlike many other cancers, a huge proportion – 46 per cent – of money directed towards breast cancer comes from fund-raising.

Wendy Scaife, the acting director of the Australian Centre for Philanthropy and Nonprofit Studies at the Queensland University of Technology, says it is only natural that people want to give to cancers they see affecting their friends and family.

"There are particular types of people who give, and one of them is called 'the responder'," she says. "That is someone who wants to give because they or someone else in their life has been associated with that organisation."

She says it is also influenced by our own fears about our cancer risk. As you read those terrible three words at the top of this story, you were probably more likely to imagine your cancer to be of the breast or prostate than, say, pancreas, and so are probably more likely to think of giving money to research in those cancers.

Perhaps that also helps explain another statistic in the Cancer Australia report. Despite estimates that 50 per cent of cancers are preventable, only 2 per cent of research funding goes to prevention.

This is highlighted as a key area for improvement.

"Even if [the amount] doubled it will still be relatively low comparatively, and we know this kind of research is expensive, because it usually requires large cohorts and very long-term studies," Dr Zorbas says.

Curtin University health policy professor Mike Daube says while it is crucial that Australia's excellent record on basic cancer research continues, prevention has been a "glaring anomaly".

"It may not be as glamorous as some other areas – it doesn't have scientists in labs wearing white coats or peering into test tubes – but it's about keeping people alive and well," he says. "There's a tremendous amount we need to know: how to change community behaviours; how health professionals can advise their patients; the needs of disadvantaged communities where cancer outcomes are much poorer; how to counter the massive commercial interests promoting carcinogenic products; and much more.

"But there is a reality that the research establishment has little interest in or understanding of prevention. Prevention gets lip-service but little serious support."

Zorbas hopes the Cancer Australia report will be used as a tool for change, not just for prevention but for rare cancers as well.

Danny Pollak was only 19 when he was diagnosed with a rare vascular cancer, haemangioendothelioma. For 10 years he battled the disease, treated by doctors who were baffled as to what to do. His mother Cynthia, distraught at the lack of research, worked tirelessly to collect a database of information from more than 100 patients all over the world.

Through a medical data not-for-profit group called BioGrid Australia she eventually came across Clare Scott, a medical oncologist and scientist at the Walter and Eliza Hall Institute and Royal Melbourne Hospital.

Associate Professor Scott and other clinicians were not able to use the information Cynthia had collected because it had not been collected according to research protocols. But she was so inspired she set herself the task of figuring out how to help.

The year Danny finally succumbed to his cancer, Scott and his family launched Cartwheel, a database that asks cancer patients to donate information to help establish a research base.

"They are usually cancers with terribly complex names," Scott explains. "The fact that the cancer itself is so rare, it means that the cell of origin of that cancer is not the type of cell that is usually involved in cancer. Something very different has happened to turn that cell into a cancer."

"If we really want to offer people evidence-based medicine, that is going to take years of dedicated research," she says. "Historically we have studied cancer in different types of tumours, so the breast cancer people will study breast cancer, the prostate cancer people study prostate cancer… here what we are talking about is studying across cancer types."

Scott says adjusting our approach to understanding cancer will benefit all cancer patients, as many actually have a rare subtype.

"Rare is the new common," she says. "What some of the latest big sequencing studies have shown … is you can look at the 20 top cancer genes that are known to be affected in human cancer, and you can find changes in these genes in the expected cancers, those that have been studied, but you can also find them rarely in a range of cancer types."

But just discovering similarities does not necessarily mean the drug treatments will work in both.

And even when they will, authorities can refuse to fund the potentially life-saving drugs because the difficulty researching rare cancers means the drugs have only been proven in the larger patient group.

Scott says there is good evidence that the blockbuster breast cancer drug Herceptin will also work in rare cancers that have a high level of a gene called HER2, such as some stomach cancers, but they have been denied access to it.

She wants to do a pilot study, for which Rare Cancers Australia is fund-raising, to prove to health authorities that rare cancers can be treated based on their molecular similarity to other cancers. She has figured out a way of getting the cost of genetic sequencing of the tumours to about $1500 a patient.

But this type of research is all very "blue sky": it's not always possible to show funding authorities that their investment is going to have a real-world impact.

Scott estimates that it would take only $250,000 to put together a proof of principle study to show how molecular matching of cancer tumours can put patients together with drugs approved for other cancers that could benefit them.

"We need to have a framework around collecting evidence, so the government can have confidence that we don't just want to throw these drugs around," she says. "But at the moment many patients with rare cancers get one or no chemotherapy courses.

Amy is Health Editor for The Sydney Morning Herald. Before working at the Herald she worked as a freelance journalist and radio presenter, as well as writing for a number of publications for doctors. She also keeps a health blog at www.dailylife.com.au.